A STUDY ON HEALTHCARE SYSTEM RELATED DEATHS DOCUMENTED BY CONVITE, A.C. FOR THE 2013-2017 PERIOD. THE STUDY WAS CONDUCTED AS PART OF THE ‘MONITORING THE RIGHT TO HEALTH IN VENEZUELA: AN APPROXIMATION BASED ON MEDICINE SHORTAGES, PREVENTABLE DEATHS AND HOSPITAL INFRASTRUCTURE’ PROJECT. PREVENTABLE DEATHS IN VENEZUELA: 2013-2017. FEBRUARY, 2018.
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TABLE OF CONTENTS 4 5
FROM THE EDITOR INTRODUCTION WHAT IS A PREVENTABLE DEATH FROM A PUBLIC HEALTH PERSPECTIVE?
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WHAT IS THE ROLE OF THE STATE IN PREVENTABLE OR IMMINENT DEATHS?
6 7
WHAT IS A HEALTHCARE SYSTEM RELATED DEATH? CASE STUDY PROFILES*
CRITERIA FOR SELECTION OF CASE SUBJECTS FOR DOCUMENTATION PURPOSES
7 8 8
STUDY TYPE AND DESIGN PROFILE OF INTERVIEWEES DATA COLLECTION TECHNIQUE AND TOOLS*
LIFE STORIES AS A METHOD FOR DOCUMENTATION OF HUMAN RIGHTS VIOLATION CASES
STUDY DATA SHEET LIFE STORIES FROM THE OTHER SIDE OF THE MIRROR* REFLECTIONS FROM ÉDGAR LÓPEZ, AN INVESTIGATIVE HUMAN RIGHTS JOURNALIST.
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FROM THE EDITOR Death is part of life. It is the culminating point of our journey on the earthly plane. In our society, death is usually seen as a painful episode of loss and is never conceived as another stage in the chronological cycle of life through which we will all go through, sooner or later, and for which we are seldom prepared because we live in denial of death. Nevertheless, understanding and facing death does not mean that we must accept as normal the occurrence of deaths that could have been prevented or in which no effort was made to mitigate and alleviate suffering and pain. Venezuela is the most violent country in the continent, with 25,000 lives lost to crime on an annual basis. It is a country where preventable deaths are seen as a matter of every-day-life, and this normalization of death has transcended other areas. Such is the case of deaths where the response of public health authorities to healthcare demands in hospitals falls short or is negligent. There is no worse experience than that of a person who dies due to causes other than those for which he or she went to the hospital in the first place, even worse
Health is
a Right AND it s Blood
brother is the right
to Life
if said causes are associated with malpractice, lack of medical supplies and medicines, or contamination of hospital spaces, which are all attributable to the State because it is the State who is ultimately responsible of guaranteeing the right to health. Over the last 4 years, maternal and child mortality has increased by 103% and 64%, respectively, which means that approximately 2 women die in a Venezuelan hospital of preventable causes associated with pregnancy. Each of these deaths must matter to us and must be denounced, condemned and researched because no more lives can be lost to preventable causes. As a human rights organization, it is our duty to make them visible, document them to demand justice and repair, and, particularly, to prevent these and many other deaths that occur in our complex humanitarian emergency from repeating.
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INTRODUCTION In delimiting the scope of this research work, it is essential to refer to certain basic concepts that are used to define preventable deaths
Glossary of Terms
within a human rights violation framework. This clarification is of paramount importance when defining conceptual conditions and criteria to select, document and record cases of violations of the right to health and to life.
Public health is a healthcare discipline or specialty associated with the State’s provision of health protection to the general population and improving health conditions in communities via the promotion of a healthy
It should be noted that the second component of the ‘Monitoring the
lifestyle, among other aspects. Public health is aimed at improving health, eradicating and
Right to Health in Venezuela: An Approximation Based on Medicine
controlling diseases and promoting health in
Shortages, Preventable Deaths and Hospital Infrastructure’ project
individuals and in the community.
is aimed at contributing a quantitative study of healthcare system related deaths occurred in various hospital facilities in Venezuela since 2013 and determining the responsibilities of the State in the early and preventable death of Venezuelan citizens, particularly those registered in State-managed healthcare institutions.
HEALTHCARE SYSTEM RELATED DEATHS
(PREVENTABLE OR IMMINENT) ARE A PUBLIC HEALTH PROBLEM
IN THAT IT IS THE DUTY OF THE PUBLIC HEALTH SYSTEM
SHOULD TO PREVENT OR
MITIGATE SUFFERING
AND PAIN HEALTH According to the World Health Organization, health is not limited to the absence of pain. It is a state of complete physical, mental and social well-being and not merely the absence of illness. The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, or economic or social condition. Photo : WE HAVE NO DOCTORS IN THE NEUROLOGY, NEUROSURGERY, RHEUMATOLOGY, CARDIOLOGY, PHYSICAL THERAPY OR REHABILITATION DEPARTMENTS
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WHAT IS A PREVENTABLE DEATH FROM A PUBLIC HEALTH PERSPECTIVE? Preventable deaths, also known as avoidable deaths, are defined as those which, given the current medical state of knowledge and of the art, could be prevented by the healthcare system via preventive policies and action, due care and/or adequate treatment. Avoidable deaths include healthcare system related deaths, namely those occurred inside a healthcare facility under certain conditions.
THE DETERMINANTS OF HEALTH The determinants of health are those conditions, variables and factors that determine the health level of individuals and communities. They include variables that affect health or disease to various extents. According to the World Health Organization, social determinants of health
WHAT IS THE ROLE OF THE STATE IN PREVENTABLE OR IMMINENT DEATHS?
refer to the circumstances in which an individual is born, grows up, lives, works and ages, including the healthcare system. Said determinants are in turn shaped by policies
Death is a natural phenomenon that transcends the existence of the State. For obvious reasons, the State has no range for action or has a very limited range to act upon the unavoidable or imminent death of a human being. The possibilities of intervention by the State are limited to cases where, even
and explain for the most part inequities in healthcare, meaning unfair and avoidable health
inequalities
observed
between
groups of people within countries and among countries in terms of healthcare.
if deaths are preceded by avoidable or reducible pain and suffering from biological and/or individual factors associated with the patient’s lifestyle, which, sooner or later, would have led to his or her decease, the State is able to improve a patient’s quality of life by promoting best management practices in the health system that it is supposed to supervise. In this connection, the State is liable and violates the right to health when the State-managed healthcare system does not precisely allow citizens with chronic health issues to die with dignity and without unnecessary suffering and/or pain. There lies the true human rights violation, for the State must preserve at all times the well-being of its inhabitants.
HEALTH DETERMINING FACTORS INCLUDE
BIOLOGICAL, INDIVIDUAL
AND/OR LIFE-STYLE, SOCIAL AND HEALTHCARE
SYSTEM RELATED FACTORS
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WHAT IS A HEALTHCARE SYSTEM RELATED DEATH? Healthcare system related deaths are those deaths that occur for lack of
LIFESTORIES
timely and quality healthcare and treatment or for the unnecessary exposure
Lifestories summarize individual and social
impair the quality of life of death victims. In many cases, healthcare system
experiences as registered and synthesized
related deaths may be preventable.
by a given person, and portray the social
to healthcare system related risks that unjustifiably accelerate death or
process undergone by the person itself and by those surrounding him or her. Life stories allow to compile the richness of experiences lived as recounted spontaneously by the
PROFILE OF CASE STUDIES*
protagonists, and generally provide more information than expected and incorporate biographical and narrative components. As such, life stories are subjective and an oral source of information, for it is the
CRITERIA FOR SELECTION OF CASE SUBJECTS FOR DOCUMENTATION PURPOSES
individual himself or herself talking to the researcher and making it possible for his or her experiences to be recounted and resignified.
For this study, ConviteA.C. considered cases of male and female individuals between 0 and 70 years of age who died in various Venezuelan states for lack of timely and quality healthcare and medical treatment or for the unnecessary exposure to healthcare system related risks that unjustifiably accelerated their death or impaired their quality of life. The healthcare system deficiencies taken into account in the study include:
Lack of medication and medical supplies Inefficient or ill-timed care by health professionals in all specialties Lack or faulty operation of medical and surgical equipment Damaged infrastructure of health centers that prevents the provision of adequate healthcare Lack of ambulances and ambulance staff Hospital-acquired infections Poor hygiene of strategic areas for medical procedures and hospitalization Poor sanitary control in food and medication handling Geographical difficulties for access to healthcare centers, either because of distance or because of problems with access roads Unaffordable medical care and treatment
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STUDY TYPE AND DESIGN In terms of the scope of the goals of the investigative work, a descriptive study was conducted to record events preceding and following the death
PROFILE OF INTERVIEWEES
of a healthcare system victim, as they occurred, without intervening in their outcome, which is guarantee of rigorous, unbiased data collection.
Interviewees are close family members or with persons with a close relationship with
the
victims,
who
experience
mourning in any of its stages as a result of the tragic loss. For the purposes of this investigative work, interviewees shall be considered family victims or survivors.
In terms of the design of the investigative work, a qualitative study was conducted aimed at delving deeper into the situation through persons who have experienced or who are currently experiencing events such as those researched, thoroughly grasping the damage inflicted on them by the early and avoidable death of a close one for reasons attributable to the poor management, infrastructure and services characterizing the Venezuelan healthcare system.
DATA COLLECTION TECHNIQUES AND TOOLS* LIFE STORIES AS A METHOD FOR DOCUMENTATION OF HUMAN RIGHTS VIOLATION CASES Cases were documented through life stories. With this technique, the greatest amount of data are obtained which could help have a more clear view of the determinants of the death of each individual and the extent to which the responsibility of the State was decisive in the outcome. The semi-structured interview approach was used to gather information
SECONDARY VICTIMS
associated with the variables under study in order to facilitate and guide the dynamics between the interviewer and the interviewee. The interview process was based on a guide that focused on the pertinent information to be collected.
Secondary victims are the survivors of avoidable deaths. The term refers to persons with special kinship ties with a deceased person and who are victims not only of the loss of a close one but also of the horrible circumstances surrounding said early and avoidable death.
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STUDY DATA SHEET
LIFE STORIES FROM THE OTHER SIDE OF THE MIRROR* REFLECTIONS FROM ÉDGAR LÓPEZ, AN INVESTIGATIVE HUMAN RIGHTS JOURNALIST Let there be no end to solidarity in the midst of such scarcity. Solidarity emerges as the main block of citizenship building. It is, in principle, a matter of recognizing ourselves as grieving citizens and victims of the Venezuelan State’s negligence in fulfilling its duty to guarantee all human rights, without exclusion. It is a matter of transcending diagnosis to take action. As soon as possible. In the face of our own pain and that of others (not alien to us), us Venezuelans find ourselves faced with a dilemma: resigning ourselves to suffering or turning suffering into a creative impulse to overcome adversity. It is easy to say, but not so easy for a mother who lives the agony in the flesh of her flesh. “When I realized that the child was in too much pain, I stood by her bed and held her hand. I said to myself: ‘Dear God, if she is not for me, let her be yours; I don’t want my daughter to suffer like this.’ This is unfair. She is a princess who doesn’t deserve to be in such pain. They had already inserted a tube through her mouth; after that, I surrender her to God. My daughter sighed, raised her hand, and departed.” Rosalía Hernández, mother of Ariel Zipagauta, a 7-year-old girl. Waiting anxiously for a medicine to arrive so that your child doesn’t die or, even worse, finding it thanks to the action of active citizens but witnessing how other flaws in the healthcare apparatus of the Venezuelan State (one wouldn’t call it a health system) lead to a fatal outcome... “When we arrived there, they were going to start chemotherapy on him, but Maturín oncology hospital got contaminated. His hemoglobin levels began to drop and he couldn’t walk. He needed a blood transfusion, but only his dad, a few cousins and one friend were donor matches. When the time came for the transfusion, sewage burst through the blood bank. Feces flooded the entire premises. They had already donated the blood, but it got contaminated. We couldn’t transfuse the child.” Surianny Coraspe, mother of José Alejandro Goitia, a 4 years and 11 months old boy. The dimension of the loss is not limited to the death of a loved one. It challenges us. What can we do? We could start with empathy, which means to truly listen to the testimonies that
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the government propaganda apparatus (which is way more efficient than its healthcare apparatus) insists on hiding. “He didn’t have an autopsy because he had allegedly died from dengue. We had a wake for him in here in Caracas and then took him to Tinaco for burial. But then, the following week, when on our way back, I got a call from the mother of one of the other children who were being dialyzed at the hospital to tell me that Samuel Becerra had died and my son had been contaminated by Klebsiella”. Yuderkis Mirabet, mother of Raziel David Juare, a 12-year-old boy. Convite, A.C. has committed to taking a step forward and accompany the victims from a continuing and unfinished reflection on how to best accomplish such task. For the time being, we understand that it is not our inexorable fate to live in mourning and become victims. It is not normal. We must not get used to tragedy. We understand that by documenting, denouncing and disseminating the multiple violations to human rights perpetrated with each death, with each unnecessary suffering, we are demonstrating two things: that life projects have been cut short and that the Venezuelan State is the culprit. The second component of our ‘Monitoring the Right to Health in Venezuela’ project deals with preventable deaths and is aimed at making human rights violations visible through the faces and voices of those who are the most entitled to denounce the negligence of the Venezuelan State. #TheStateDoesn’tCare. “My son didn’t need a hard-to-find medicine; he just needed an anticonvulsant, potassium nitrate, bicarbonate and vitamins. That, he always received. I claim that my baby died because of medical negligence. When I took him to the hospital, he needed to be admitted in the ER for observation, but he was sent to hospitalization, where they had no oxygen. They inserted needles on him 40 times in two days. Then, he bled internally, his veins burst and the blood got to into his lungs.” Idalia Brito, mother of Carlos Santiago Mijares Brito, a 1 year and 5 months old boy. It is ten accounts, ten life stories that have been ignored by the governmental authorities charged with safeguarding the health and lives of Venezuelans. These are testimonies that have not received due attention from the Attorney General’s Office nor from the Ombudsman’s Office.
The father who suffers next to his dying daughter will never understand how the Supreme Court of Justice has denied petitions for amparo remedies to guarantee adequate provision of public health centers, alleging (with the excuse?) that economic, social and cultural rights cannot be directly claimed before the courts; he cannot understand either that, at
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most, he would have to wait until next elections to “punish” the negligent authorities with a no reelection vote; he cannot grasp the meaning of rulings of this kind supporting the agonic death of her little girl. And he shouldn’t have to, because they are simply unfair rulings. “She was all swollen and her little eyes were somehow popping out. I talked to her, but she didn’t listen. When she urinated, she urinated blood. She has hurting badly and we had her injected morphine, but it didn’t stop the pain at all. ‘It hurts, it hurts’, she would cry. Then, she wouldn’t event say a word, and when we saw her touching her leg, we couldn’t but guess that her pain was unbearable.” Pedro Villahermosa, father of Sofía del Valle Villahermosa, a 3 years and 8 months old girl.
A respectful approach to the victims is the cardinal principle that guides our work at Convite, A.C. The documentation of painful stories is just a starting point for developing caring relationships with each and every victim, strengthened by the conviction that, in the current Venezuelan humanitarian emergency, it is imperative (and
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